Superpowers and control

My friend, @bornmiserable, drew me as a superhero and it was the best thing that’s happened in a long time. It lifted me up on a day (month) when I really fucking needed it. I wrote about my IIH diagnosis and my superpower ability to make extra cerebrospinal fluid and he made me a superhero.

The thing is, I do not feel like a superhero right now. I feel like Debbie Downer.

Anyone who checks on me gets the same reply – things are not great. I feel like trash and when I don’t feel like trash, I am too scared to do anything because I will feel like trash again. This disorder is making me agoraphobic.

I estimate that 70% of my time is spent feeling totally awful, and I am completely unable to do anything between the headaches, diarrhea, or dizziness. The 30% of the time when I feel able to do something, I focus on that fear that something will go wrong if I am out in public for too long. Just yesterday I felt well enough to take a shower only to have diarrhea right after I dried myself off.

I am taking a sub-therapeutic dose of the medication because I cannot tolerate the side effects. It appears that the punishment for this is that the high pressure headaches have come back. They are so awful, the pain wakes me up. It is on the whole top of my head and down my neck and in my shoulders. I get nauseous, dizzy, and can’t do anything. This has happened three different days within the last week. On the days that I do not have the headache, I have the waves of feeling awful (tunnel vision, anxiety feeling, dizziness, nausea), but they pass pretty quickly. And there is always the never-ending joy of shitting rivers.

I still am not working. I sent another email requesting to delay the start date again for the new job. They have not replied.

I heard that the true meaning of frustration is that you are not in control. I would say that is the most accurate description of my life right now. My amazing boyfriend does everything and I could not survive without him, but I am frustrated. The frustration that I cannot make it through grocery shopping trip, or stand to chop vegetables for dinner only subsides when I focus on other frustrations like needing to lay down in order to do anything. I can only type while on a bed now. It is the only way that I can work. I don’t think that I can show up to my new job and ask for room to blow up the air mattress.

Guilt is another super rad emotion that is raging around in my head. Here is a list of the things I feel guilty over right now:

I am not an active participant in my relationship.

He is doing so much for me and is making so many sacrifices to ensure that we are okay and I am just laying here.

I don’t have an income, but have mounds of school loans and debt knocking on my door.

When my mother was fighting lupus and I was not there, it was often too difficult for me to talk to her because she was always in pain and depressed and I thought it was too hard. I didn’t give her the time and attention that she deserved. And now here I am, sick and depressed.

I get easily annoyed when I am feeling completely awful and people check in on me via text with unsolicited advice or repeating the same questions over and over (and yes, I know it is just because they love me, hence the guilt list).

I feel like one of those people that found out they have an illness and are instantly sick.

I have to say that I have a circle of amazing people in my life. They listen to me cry and complain, let me have that time, and then tell me that my feelings are valid. I was reminded that I did not just get sick four weeks ago when I was diagnosed. I have been fighting the endless headaches for months – I blamed it on work or the weather, but was throwing every medication at it that I could find. That friend also wisely told me that maybe being locked up in the house is not helping my mental state, but being sick and pushing myself isn’t exactly ideal either.

I am also doing that thing where I keep thinking that everything is connected. Not in a spiritual/we are all one deal, but overanalyzing my current and past symptoms. If I were to keep a log, it would be like a diary of a mad person.

“Around the same time the last two nights I have had the waves of awfulness. Could this be related to time or weather?
If this was caused by my IUD, shouldn’t the symptoms be lesser now that I had it removed?
Check into genetic possibilities – any chance of autoimmune disorders causing this as well? Could mom have had it?
Anxiety and depression are associated with this disorder, which comes first?
If it was not caused by the IUD, could this be something that I have had for a long time?”

When I was a teenager I used to faint. It happened a lot. I would feel it coming on and knew that if I did not lay down immediately, I would black out. I blacked out quite a few times: once was at a concert and my best friend said that my lips looked blue when I was conscious again, another time was at a bonfire and I didn’t get to my car fast enough and ended up falling flat onto the driveway and my head bounced off of the concrete and pebbles (thankfully I was wearing a hippie winter wool hat that helped cushion the bounce), I once fainted while getting into the shower before school and took the shower curtain rod down with me (thankfully that noise is what woke my parents to find me), and there was a time it happened at a friend’s house and we blamed it on the King Cobra beer. My parents took me to our primary care doc and he ran blood work and an ECG, but found nothing. Then he had me wear an EEG for 24 hours. I had electrodes all over my scalp so they could monitor my brain and of course I didn’t faint while wearing it so there was nothing unusual and they just sorta left it at that. I think about this often now especially when I feel like I am going to faint. As a nurse and overanalyzing it now, I think that they did not thoroughly assess me, but at this point I am grasping at anything.

I will finally see a neurologist next week. I have some guilt over how much hope I am putting into this appointment, but I am working through that. I have only seen the neuro residents in the ER and the awful neuro NP, so this appointment comes with high expectations. I want a true treatment plan and confirmation of diagnosis. I want options. And I want my list of questions answered.

Most importantly, I want to start to feel like someone in control of their superpower.